Pathlight - Autumn 2021

A publication of the Pulmonary Hypertension Association

2021 // Volume 30 // No. 3

PUTTING ADVOCACY EXPERIENCE TO WORK FOR PH COMMUNITY

PLUS Advocacy

THROUGH THE YEARS FIND YOUR

‘Perfect-Fit’ Doctor RESEARCH ROOM:

Advancing PH Treatment

Life With PAH Can Be Challenging.

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Hear an educational Understand more about the Discover how to have more presentation from a PAH effects of PAH, the 3 key informed conversations nurse on topics that may be treatment pathways, and about PAH with your care Knowledge.

Understanding. Empowerment. important to you. treatment goals. community.

Webinars are available at various dates and times so you can register for one that best fits your schedule.

Register today at PAHregister.com or call 1-888-370-8111 Your PAH healthcare team should always be your main source of information. This program is not intended to provide medical advice or address specific medical concerns.

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PAH=pulmonary arterial hypertension. *The speaker is a paid consultant presenting on behalf of Actelion, a Janssen Pharmaceutical Company, and must present information in compliance with FDA requirements applicable to Actelion, a Janssen Pharmaceutical Company.

This program is sponsored by Janssen Pharmaceuticals, Inc. ©2021 Actelion Pharmaceuticals US, Inc. All rights reserved. cp-201358v1 0121

Knowledge. Understanding. Empowerment.

IN THIS ISSUE 2021 // VOLUME 30 NO. 3

7

PH Awareness Month

8

Advocacy Through the Years

12 Congressional Champions 14 Persistence Pays Off 16 5 Tips To Be Your Own Advocate

12

18 Putting Advocacy Experience to Work

16

22 Research Room: Advancing PH Treatment 24 Symposium Speaker: Navigating Difficult Discussions

8

26 Find Your ‘Perfect-Fit’ Doctor 28 Do You Have What It Takes to Help Others?

29 What’s New in Advances in Pulmonary Hypertension 31 COVID-19 and the Future of Fundraising

18

ON OUR COVER 14

Mike Naple puts his professional experience to work advocating on behalf for the PH community. This issue examines advocacy and awareness.

IN EVERY ISSUE 5

Letter From the Chair

32 Quick Takes 34 Calendar 26

35 Passages

PHASSOCIATION.ORG 3

30 YEARS OF PHA

PUBLISHER

BOARD OF TRUSTEES

Matt J. Granato President & CEO

Colleen Brunetti, M.Ed., C.H.C., chair Tony Lahnston, chair-elect/treasurer Karen A. Fagan, M.D., immediate past chair Nicole Creech, secretary Matt J. Granato, LL.M., MBA, President and CEO, ex officio

STAFF Linda Busche Editor-in-Chief Karen Smaalders Vice President, Communications and Marketing

Trustees-at-Large

FAX: 301-565-3994

Cheri Abbott, R.N., CCRP Frank Cann Murali M. Chakinala, M.D., FCCP Colleen Connor Ramona Doyle, M.D., M.Sc. Anna R. Hemnes, M.D. Kimberly Jackson, R.N., B.S.N. William Jansen Mitch Koppelman, Ph.D. Michelle Ferdinand Liu, M.D., M.P.H., FAAOA Ronald J. Oudiz, M.D. Monica M. Penaranda Diane Ramirez Traci Stewart, R.N., M.S.N., CHFN Doug Taylor Matt Wall Jessie Kohler Wenninger, Esq. Melisa A. Wilson, D.N.P., APRN, ACNP-BC

WEB: PHAssociation.org

Emeriti ex-officio

EMAIL: PHA@PHAssociation.org

C. Gregory Elliott, M.D., FCCP, MACP Michael D. McGoon, M.D. Edwin Simpson Judith Simpson, R.N., Ed.S.

CONTRIBUTORS Colleen Connor, Dana Falk, Tonya Hall, Lauren Intrieri, Katie Kroner, Mira Kruger, Mike Naples, Lorraine Robbins, Abby Sickles, Joanne Sperando, Jaeger Spratt, Sharlene Steward, Jack Stibbs, Melissa White, Jill Zajac, Ava Zechiel. Cover photo: Louis Tinsley, Design: Mary Beth Ramsey

CONTACT 8401 Colesville Road, Suite 200 Silver Spring, MD 20910 TEL: 301-565-3004

SUPPORT LINE 800-748-7274 We’re here to support anyone with a connection to PH. (daytime, please)

Liaisons Cheri Abbott, R.N., CCRP Kimberly Jackson, R.N., B.S.N. Distinguished Advisors

Carl Hicks

David B. Badesch, M.D. Erika S. Berman Rosenzweig, M.D. Bruce H. Brundage, M.D. Richard Channick, M.D. C. Gregory Elliott, M.D., FCCP, MACP Karen A. Fagan, M.D. Michael D. McGoon, M.D. Vallerie V. McLaughlin, M.D. John H. Newman, M.D.

Matt J. Granato, LL.M., MBA

4 PATHLIGHT ISSUE 3

Murali M. Chakinala, M.D., FCCP, chair Anna R. Hemnes, M.D., chair-elect Ronald J. Oudiz, M.D., immediate past chair Steven H. Abman, M.D. William R. Auger, M.D. Eric D. Austin, M.D. MSCI Sonja Bartolome, M.D. Todd M. Bull, M.D. Kelly Chin, M.D. Vinicio A. de Jesus Perez, M.D., FCCP, FAHA, ATSF Teresa De Marco, M.D. Ankit A. Desai, M.D., FACC, FAHA Jeffrey Fineman, M.D. Robert P. Frantz, M.D. Mardi Gomberg-Maitland, M.D., M.Sc. Kristin B. Highland, M.D., MSCR Steven Kawut, M.D., M.S. Tim Lahm, M.D. Deborah J. Levine, M.D. Lana D. Melendres-Groves, M.D. John J. Ryan, M.D., M.B., B.Ch., B.A.O. Jeffrey S. Sager, M.D., MSCE Oksana A. Shlobin, M.D., FCCP Thenappan Thenappan, M.D. Corey E. Ventetuolo, M.D., M.S. R. James White, M.D., Ph.D. Timothy L. Williamson, M.D. Delphine Yung, M.D.

Honorary President & CEO

Submissions to Pathlight are welcome.

Please email your articles, photos and queries to Communications@ PHAssociation.org.

SCIENTIFIC LEADERSHIP COUNCIL

PH PROFESSIONAL NETWORK EXECUTIVE COMMITTEE Cheri Abbott, R.N., CCRP, chair Kimberly Jackson, R.N., B.S.N., chairelect Fran Rogers, M.S.N., CRNP, immediate past chair Loida A. Johnson, CRNP Tisha Kivett, R.N., B.S.N. Melissa Magness, M.S.N., APRN, CNP-AC Susie McDevitt, M.S.N., ACNP-BC

30 YEARS OF PHA

LETTER from the

CHAIR I

n this edition of Pathlight, we tackle a topic near and dear to me: advocacy and awareness. Although there’s nothing I can do about having pulmonary hypertension (PH), there is a lot I can do to turn this difficult diagnosis into something good. Enter advocacy.

When engaging in political advocacy, I use three strategies for success.

Personalization: Legislators respond to personal stories.

Practice telling your story in a way that evokes emotion.

Don’t sugar coat the hard parts! But specific about actions the legislator can take to help your situation.

Connection and relationships: It’s helpful to amplify the stories and stance of others, both PHers and the broader rare disease community. Build relationships with other likeminded advocates, and leverage Pulmonary Hypertension Association (PHA) tools to target key legislative agendas.

Build relationships with my representatives. Learn their stances and voting histories, and speak specifically to those issues. Thank them for their good work or invite them to join an initiative.

Consistency: Advocacy is a long game. You might not feel like you’re getting anywhere when you write the same state representative each year. But you don’t know what happens behind the scenes. More than once, someone from a legislator’s office said they remembered me from previous outreach. You never know how your message will land, so craft it carefully and follow through.

In this issue of Pathlight, you’ll hear many advocacy stories, from the political to the personal.

In the cover story, Mike Naple of Washington, D.C., describes “Putting Advocacy Experience to Work for PH Community.” Mike was a congressional staffer when he was diagnosed with Group 3 PH. He specializes in health care advocacy communications.

In “Advocacy Through the Years,” Jack Stibbs shares how he connected with a member of Congress to build support for a PH bill, when his then 5-year-old daughter was newly diagnosed. Colleen Connor recalls the excitement and anxiety of traveling to D.C. for the first time to meet lawmakers and congressional staffers — and ultimately gaining a senator’s support after he heard her story. Joanne Sperando describes decades of experience speaking for the community in regulatory and legislative hearings.

The companion article, “Congressional Champions: Hooked by Patient and Caregiver Stories,” profiles five lawmakers who have worked on behalf of the PH community.

In “Persistence Pays off With Diagnosis,” Dana Falk of Providence, Rhode Island, discusses the importance of self-advocacy after years of inconclusive tests and skeptical physicians.

Similarly, Lorraine Robbins of Warrington, Pennsylvania, describes speaking up for herself in “Find Your Perfect-Fit Doctor.”

Although I’ve been advocating for over a decade, I was never on my own. Instead, I relied heavily on PHA to coach me and to support my efforts. Advocacy is an area in which we shine.

Since 1991, PHA’s advocacy efforts have secured essential research funding and health care protections and led to the first PH law. Those victories wouldn’t have been possible without everyone involved adding their voices.

The idea of becoming an advocate may feel daunting.

PHA has resources to help. Learn to leverage your voice for change at advocacy@PHAssociation.org.

Warmly,

Colleen Brunetti, M.Ed., C.H.C. Board of Trustees Chair, Pulmonary Hypertension Association

PHASSOCIATION.ORG 5

30 YEARS OF PHA

We strive to help PH patients thrive.

We work every day to help patients with pulmonary hypertension. It’s more than a mission—it’s our promise.

BAYER and the Bayer Cross are registered trademarks of Bayer.

Bayer 100 Bayer Boulevard, Whippany, NJ 07981 USA ©2017 Bayer PP-400-US-3751 August 2017

Science For A Better Life

30 YEARS OF PHA

GET READY FOR

PH Awareness Month

E

ach November, the Pulmonary Hypertension Association (PHA) provides tools to help people living with PH, their loved ones and health care professionals educate the public, health care providers, those at risk for PH and those who are new to the PH community.

This year’s theme is “Spark Awareness,” which evokes PHA’s 30th anniversary theme, “Lighting the Way Forward.”

A highlight of the campaign will be an interactive PH Awareness Month Calendar. Introduced last year during Awareness Month, the calendar works like an online Advent calendar: Just click on the date to discover facts, tools and rewards to educate people about PH risk factors, symptoms and resources.

Each day, the Spark Awareness calendar will reveal new information and downloadable resources to discover and share, similar to a virtual advent calendar.

Another resource to promote PH awareness is an online toolkit with social media graphics, sample posts, profile and cover images, customizable news releases, and flyers for health care professionals to print and post in their offices and clinics.

Awareness Month activities include a Day of Action Nov. 1 and CTEPH Awareness Day Nov. 10. The Day of Action is a virtual activity to educate Congress about the devastating health and lifestyle effects of PH. Please share your story to help lawmakers understand the importance of funding research and ensuring accessible, affordable health care.

On CTEPH Awareness Day, PHA will draw attention to chronic thromboembolic pulmonary hypertension (CTEPH), a form of PH caused by old blood clots in the lungs. Other activities include a PHA Live webinar on Left Heart Disease and a Nov. 30 fundraiser for Giving Tuesday. The fundraiser will feature a $30,000 match in recognition of PHA’s 30th anniversary.

Visit PHAssociation.org/AwarenessMonth to learn more.

PHASSOCIATION.ORG 7

30 YEARS OF PHA

ADVOCACY Through the Years

ADVOCACY IS MORE THAN VISITING CAPITOL HILL FOR A DAY. For the pulmonary hypertension (PH) community, advocacy can mean raising awareness, sharing experiences, contacting Congress, and Since the Pulmonary supporting and protecting critical legislation.

Hypertension Association’s start in 1991, its advocacy efforts have secured essential funding, put patients and caregivers face-to-face PHA couldn’t with lawmakers and resulted in the first PH law. have accomplished all that it has without people with PH, caregivers and health care professionals. In this story, three PH advocates share their experiences and how their efforts have made a difference.

JACK STIBBS HIGHLANDS, NORTH CAROLINA

In 1997, our daughter Emily was diagnosed with idiopathic primary PH. She was 5 years old. We could barely pronounce the words, much less figure out whether it was a lung or heart disease. After she was given three years to live, we had to find out everything we could about PH research and take action.

We adopted the motto: Knowledge is power.

BIPARTISAN COOPERATION

Emily Stibbs, then 14, and her father, Jack Stibbs, ask Congress for PH research funding in 2006.

8 PATHLIGHT ISSUE 3

When our family was living in the Houston, Texas, area, we were fortunate to have a friend in Congress, Rep. Kevin Brady, R-Texas, who knew of our plight and vowed to help us. He began to build support for a PH-related bill in the House of Representatives, the Pulmonary Hypertension Act of 2001. [See story, Page 12].

Brady contacted Rep. Tom Lantos, D-Calif., whose granddaughter had PH. Together, they worked their sides of the aisle and convinced half the House to co-sponsor their bill. It felt like we finally had some people of influence taking up the cause and bringing the issues of a rare disease to the forefront.

30 YEARS OF PHA

Emily testified in front of a congressional committee in 2006 when she was 14. She asked for funding for PH research. Brady and our lobbyists thought it would be most effective to hear from a young patient. And they were right.

The committee members had a very lively exchange with her.

Unfortunately, the Pulmonary Hypertension Act didn’t pass, but it increased PH awareness and PHA’s with the lawmakers and regulatory officials.

Today, our daughter Emily is 29, happily married and living in Austin.

COLLEEN CONNOR WEST CHESTER, PENNSYLVANIA

My first experience in PH advocacy was PHA’s 2009 congressional luncheon. I was diagnosed in November 2007, and my PH had progressed rapidly. It was difficult to be suddenly debilitated in my late 30s with two young children.

I was interested in understanding how I could help PHA, so I reached out to Katie Kroner, now PHA’s vice president of advocacy and patient engagement. Katie offered to set up meetings so I could share my story before and after the luncheon. I also asked my employer’s lobbyists for help securing meetings with my members of Congress.

I was excited, committed and nervous about meeting my senators. Traveling to Washington, D.C., would be difficult, but my family and I packed a suitcase of large oxygen tanks, a cooler of dry ice for my Flolan, and my IV medicine and supplies.

SHARING MY STORY

Staffers from both senators’ offices were kind and welcoming. I shared my diagnosis story and spoke about the lack of convenient therapies and needed research. Then a PHA representative gave an overview of legislation proposed to fund PH research.

Colleen Connor makes advocacy a family affair. Above: Sen. Bob Casey (right) with Colleen’s husband Shawn, son Ryan and daughter Keira in 2013. Below: The Connor family gather for Easter 2021.

Later that day, Sen. Bob Casey, D-Penn., agreed to sponsor the bill. He became the first senator to co-sponsor a PH bill. He has remained committed to supporting PHA and has kept in touch with me.

I invited my PH specialist Darren Taichman, M.D., to attend my meeting with Sen. Arlen Spector, R-Penn., While

Lend your voice, because when we stand together, we are strong, and we are heard.

PHASSOCIATION.ORG 9

30 YEARS OF PHA

Spector didn’t support the legislation, he said he understood the need for research funding and would continue to increase funding for general disease research at the National Institutes of Health (NIH).

Since then, I have written to my congressional representatives and arranged meetings in Philadelphia with legislative assistants from the office of Sen. Pat Toomey, R-Penn., and Dr. Taichman. I also participate in PHA’s Advocacy Action Network.

We advocate on issues critical to our community, such as increased NIH funding for PH research, or restricting insurance companies from overriding your physician’s orders and dictating new or transition therapies.

Every month, it seems there is an opportunity to lend your voice to a cause important to all of us. Through advocacy we can impact legislation and ultimately our quality of life and outcomes. Lend your voice, because when we stand together, we are strong, and we are heard.

This page: Joanne Sperando asks a House of Representatives committee in 2008 to increase National Institutes of Health funding for PH research.

Opposite: Joanne Sperando (third from left) with former Rep. Peter King (center) in his district office in Massapequa, New York.

10 PATHLIGHT ISSUE 3

JOANNE SPERANDO NORTH BABYLON, NEW YORK

My 23-year ‘PH-versary’ was this summer. The time has gone by so quickly, and I’m grateful beyond words. My PH story is a familial one.

My mom’s sister was diagnosed with PH at 23 in 1963 and died very quickly. The family forgot the words

“pulmonary hypertension” but found them again in 1995 when my brother John became seriously ill and couldn’t get a diagnosis for months. We pulled my aunt’s records from 1963, and that’s when the doctors put it together and told us that we had familial PH. I was diagnosed three years after my brother in 1998. We formed the first support group in the area the

30 YEARS OF PHA

following year with lots of help from PHA. Bringing patients together was a very rewarding experience, and it was gratifying to see patients meet other patients for the first time.

SPEAKING UP FOR THE COMMUNITY

My first experience in testifying about PH was in August 2001 when I appeared before the Food and Drug Administration to talk about a drug trial I participated in for subcutaneous Remodulin. I conveyed how PH affected me and my experience with the medication. It was a positive interaction, and I realized quickly that I was giving a voice to the PH patient community.

In 2006, I was asked to speak to the New York Department of Health’s Pharmacy and Therapeutics Committee and advocate for Medicaid coverage for another PH medication I was taking.

The more often I spoke, the more comfortable I became talking about the needs and wishes of the PH community. In March 2008, PHA asked me to ask the House LaborHHS-Education Appropriations Subcommittee for additional NIH funds for PH research. I also thanked them for addressing a backlog of Social Security Disability Insurance applications.

I was one of many speakers asking the subcommittee to take action on behalf of the patient community. As I sat there, listening to all the other patient speakers, I realized that we were all essentially asking for the same thing: to be heard, to be understood, to be recognized and to be supported

‘We were all essentially asking for the same thing: to be heard, to be understood, to be recognized and to be supported in our efforts to save our own lives.’ in our efforts to save our own lives and the lives of everyone affected by illness, especially rare illness.

AWARENESS AND EDUCATION

That August, my family, my support group co-leader Mary Barlett, N.P., and another family visited Rep. Peter King, R-N.Y., in his district office. We asked him to co-sponsor a bill to raise PH awareness and create an education campaign. We told him our story, and he agreed on the spot.

I told my story again at PHA’s 2013 congressional luncheon in Washington,

D.C., using pictures to illustrate my family’s journey with PH. I lost my brother John in 2015. He battled PH for 20 years, fighting so hard the whole time. I have concluded that telling a really good story, even a sad one, can raise awareness and educate.

It empowers patients, gives a voice to our community and raises our profile. I encourage everyone in the PH community to give it a try. Together, our voices will be heard.

PHASSOCIATION.ORG 11

CONGRESSIONAL

CHAMPIONS Hooked by Patient and Caregiver Stories

W

ho are the lawmakers who have championed pulmonary hypertension (PH) causes in the past three decades?

These members of Congress have backed PH-related legislation because of personal or constituent connections with the community.

Rep. Kevin Brady (R-Texas) has served the state’s 8th congressional district since 1997. More than 20 years ago, Brady introduced the first PH-related federal legislation, the Pulmonary Hypertension Research Act, after a request from Jack Stibbs, whose daughter Emily has PH. The bill urged the National Institutes of Health to expand research into PH. Brady, who plans to retire next year, has been a steadfast champion of the PH community ever since. Over the years, he has introduced other PH-related legislation.

Rep. Tom Lantos, D-Calif., served in Congress from 1993 until his death in 2008. Lantos joined Brady in championing several PH-specific bills after his granddaughter, Charity Sunshine Tillemann-Dick, was diagnosed. Charity and Lantos organized several major fundraising and awareness events, including an opera performance and a rock concert.

Rep. Lois Capps, D-Calif., served the state’s 24th congressional district from 1998 until her 2016 retirement. Before serving in Congress, Capps was a nurse and health advocate for more than 30 years. After Lantos died, the Pulmonary Hypertension Association

Rep. Tom Lantos

12

30 YEARS OF PHA

TAKE ACTION

Above left: PHA members from California with Rep. Lois Capps (left). Above right: Jack Stibbs (left) with Rep. Kevin Brady. Left: PHA’s Katie Kroner, Rep. Jamie Raskin and Kerry Babylon.

You, too, can develop a legislative champion. When you share your story, you can convince others to join the fight against PH: Business owners make donations. Reporters publish news stories. And members of Congress are compelled to action.

PHA’s Advocacy Action Center provides an easy way for you to educate your members of Congress about the challenges of PH and how Congress can help. Discover sample messages to Congress about protecting access to telehealth, limiting step therapy requirements, increasing research funding and more.

GET STARTED x

PHAssociation.org/advocate or call 301-565-3004 x758

(PHA) asked Capps to step up as a Democratic leader on PH legislation. When she agreed, she credited the power of Charity’s story. Capps had heard Charity speak and sing at a PHA event.

Rep. Jamie Raskin (D-Maryland) has served the state’s 8th congressional district, which includes PHA’s office, since 2017. Raskin committed to become champion on behalf of the PH community after one constituent meeting. At a recent PHA congressional briefing, Raskin said, “When someone falls ill, that is misfortune. When government is in a position to help that person and does not, that is injustice, and we must take action to rectify it.”

Sen. Bob Casey, D-Penn., became a PH champion in 2009 after Colleen Connor participated in PHA’s annual congressional briefing in Washington, D.C. Before the meeting, Colleen told Casey about the challenges of living with pulmonary hypertension and asked him to introduce a PH bill in the Senate. Within an hour, Casey’s staff called Connor to say he would introduce the bill. Since that time, Casey has introduced several pieces of PH legislation and remains a champion in the fight against PH.

Sen. Bob Casey

PHASSOCIATION.ORG 13

30 YEARS OF PHA

Persistence Pays Off Despite Skeptical Doctors, Inconclusive Tests

BY DANA FALK

DANA FALK OF PROVIDENCE, RHODE ISLAND, was a 46-yearold mother of three teenage daughters when she was diagnosed with pulmonary hypertension (PH) in 2010.

Today, she and her husband support the Pulmonary Hypertension Association’s mission as annual donors.

I

n 2005, I became acutely aware that I was having trouble breathing. I exercised regularly and maintained a healthy weight, so it didn’t make sense that I couldn’t jog for more than a couple of minutes without gasping for air. My trainer was continually reducing my workout routine. I knew something was very wrong.

I watched a program called “Mystery Diagnosis” on the Discovery Channel. The subject of the program was a young girl who ultimately was diagnosed with PH. I had never heard of the disease, but it struck me as similar to how I was feeling. I wrote down the name and decided to investigate.

Several doctors dismissed my suspicions. I took many tests, all of which came back with no remarkable results. One pulmonologist told me my lungs would sound like tissue paper crinkling if I had PH. Because they didn’t sound like that, he said I couldn’t have PH. But he referred me to another pulmonologist.

I was relieved when my new doctor assured me he wasn’t going to let me go until we found out what was wrong.

A perfusion test yielded a clue, and I underwent a right heart catheterization.

After five years of wondering, I was diagnosed with idiopathic pulmonary arterial hypertension. Fortunately, I’m responsive to vasodilators.

IMPORTANCE OF SELF-ADVOCACY

Throughout my journey, I realized the importance of advocating on behalf of my own health. When you keep insisting that you’re not well, even though tests show nothing and you appear to be fine, it’s incredibly frustrating.

Dana Falk (second from left) with daughters Leah, Audrey, Rachel.

Opposite: Dana Falk with husband Eric.

14 PATHLIGHT ISSUE 3

30 YEARS OF PHA

‘My intent today is to show just how elusive PH is, even to an attentive doctor who you’ve worked with for years.’

My intent today is to show just how elusive PH is, even to an attentive doctor who you’ve worked with for years. Thankfully, the pulmonologists I saw said they believed me, despite test after test that revealed nothing.

I knew they were trying to reassure me that they didn’t think I was exaggerating or making up symptoms.

I was glad to hear it at the time, but it did make me worry for other patients. I can’t imagine what it would have been like if they hadn’t believed me.

Now, I am lucky to be able to take a pill each day and basically function as I want to. I still play tennis, but I no longer have the endurance for very long rallies. I still work out, but my trainer understands that I can’t maintain exertion for too long.

Any vascular weakness I had before is now exaggerated and can be uncomfortable. We tailor my workouts and our family activities, so they are safe for me.

GALVANIZING THE COMMUNITY

Having PH can be very lonely and frightening. As soon as I started looking into PH, before I had been officially diagnosed, I found PHA and saw what an amazing resource it was.

PHA gathers patients who feel alone and gives them a place to find camaraderie, information and hope.

I love reading about other people with PH, treatment advances and professionals who dedicate themselves to this niche of medicine. I feel a connection to the other patients I read about.

It is a comfort to know one organization does so much for PH

patients and that we have so much access to it.

PHA, which keeps getting stronger, galvanizes people to push for government funding and raise funds and awareness. It gathers various constituencies to learn from each other and advance understanding and treatments, and it gets information to patients not just at the start of their PH journey, but as new information comes along.

PHA is truly the heart of the PH community, and donating is akin to giving someone oxygen.

I use the knowledge and resources PHA offers to advocate on behalf of myself as a patient. I also donate to PHA as a form of advocacy — to help the organization continue its mission and demystify PH for future patients.

I encourage others to do the same — PHA is a wonderful and solid support for our community.

HELP SUPPORT PHA’S MISSION of extending and improving the lives of those affected by PH. Visit PHAssociation.org/donate to make a gift today.

PHASSOCIATION.ORG 15

30 YEARS OF PHA

DISCLOSE PH ON YOUR OWN TERMS. Disclosing that you have pulmonary hypertension (PH) is a personal choice, says Janessa Curnow, of Grand Rapids, Michigan.

Janessa was diagnosed with pulmonary arterial hypertension (PAH) in 2013. Tell your employer or future employer about your condition on your own terms. If you are interviewing for a new career opportunity, you can ask about workplace accommodations and accessibility without providing the details of your condition, Janessa says. Employers are legally required to provide reasonable accommodations for employees with a disability. When you decide to share that you have PH, talk to the human resources department, Janessa recommends.

1

ASK FOR HELP AND ACCESSIBILITY. Let people know when you need help, says teacher Katie Cates of Shakopee, Minnesota. Katie, who was diagnosed with PH in 2012, says most people will understand that you may need extra assistance.

If they don’t understand, it’s not your fault. Accessible parking spots, bathrooms, mobility devices and oxygen aren’t disadvantages; they level the field, Janessa says. Those accessibility tools allow you to do more, so it’s OK to use them to your advantage.

2

TIPS TO BE YOUR OWN ADVOCATE 16 PATHLIGHT ISSUE 3

30 YEARS OF PHA

UNDERSTAND REST CAN BE PRODUCTIVE. Your worth isn’t determined by your productivity, says Nicole Northrop of Orlando, Florida. Nicole, who was diagnosed with PH in 2010, says rest is necessary, and you shouldn’t feel guilty for taking time to recover. With PH, you might need to reprioritize and redistribute your energy, Janessa says. If you feel tired, it’s OK to say no to requests and invitations, Janessa adds. You can’t help others if you don’t help yourself first, she says.

3

LOOK FOR LOCAL OR VIRTUAL ADVOCACY OPPORTUNITIES. You don’t need to travel to Washington D.C. to become a PH advocate, says PHA board member Colleen Connor [See story, Page 9]. The Pulmonary Hypertension Association Advocacy Action Center makes it easy to advocate on issues critical to the PH community, such as increasing research funding and protecting insurance coverage. PHA provides a customizable letter you can send directly to Congress. Also, look for opportunities to connect with your representatives in your state.

4

SHARE YOUR STORY. You can advocate for yourself and others sharing your story like PH advocate Mike Naple [See story, Page 18]. Advocating through storytelling is when people bring their experiences to the table to change policy, Mike says. You can make change by sharing your PH journey with Congress on Capitol Hill, but you can also make a difference by sharing your story with a neighbor or members of the PH community.

Advocate by sharing your story in PHA’s Right Heart Blog at PHAssociation.org/get-involved/ share-your-story.

5

You can make change by sharing your PH journey with Congress on Capitol Hill, but you can also make a difference by sharing your story with a neighbor or members of the PH community.

PHASSOCIATION.ORG 17

Writer and communications strategist Mike Naple has been involved with advocacy for more than a decade. He works at a public affairs firm in Washington, D.C., where he specializes in health care advocacy communications. Mike’s pulmonary hypertension (PH) advocacy started after his Group 3 diagnosis.

18

30 YEARS OF PHA

Putting Advocacy Experience to Work

for PH Community

BY MIKE NAPLE

A

dvocacy was part of my life long before pulmonary hypertension (PH) entered the picture.

Before my diagnosis, I worked on Capitol Hill in Washington, D.C., as communications director for a congressman from my home state, California.

Congressional staffers are surrounded by advocates roaming the halls, standing in front of you in the cafeteria line or sitting across from you in a meeting, hoping to educate legislators on important issues.

In May 2015, I noticed shortness of breath, dizziness and chest pains during the short walk from the Metro stop to my office. I had been at my job about three months.

SEEKING DIAGNOSIS

Like others, I had trouble getting an accurate and timely diagnosis. My doctor insisted I had untreated asthma and wanted to treat my symptoms with inhalers and prednisone, only to be confused why I showed up two months later with worse symptoms.

The doctor disregarded previous episodes of pulmonary edema, which can occur when traveling to high altitudes, although the elevations were relatively low for severe symptoms.

After a scan showed ground-glass opacities in my lungs, my doctor dismissed the possibility of a biopsy or a right heart catheterization. My doctor said a right heart catheterization or a biopsy were too invasive and he didn’t want to pursue that course of treatment. The doctors were reluctant to recommend semi-invasive procedures even if they could lead to an accurate diagnosis.

I knew any procedure came with risk, but I wanted to explore all available options to address significant shortness of breath episodes. Instead of listening to me, the doctor kept prescribing medications and ordering new tests.

At the same time, the distance I could walk without gasping for air shortened by the block. I knew if I wasn’t a stronger advocate for myself, things could get worse before they got better.

PHASSOCIATION.ORG 19

30 YEARS OF PHA

UNCERTAIN FUTURE

I advocate because policy decisions made in Congress have real impacts for people like me who regularly use the U.S. health care system.

My attempt to advocate for myself resulted in more echocardiograms and stress tests before that doctor prescribed in-home oxygen therapy in December 2015.

One morning in March 2016, I woke up sweaty with excessive chest pains and decided to check myself into urgent care. I believe this action, in which I had to advocate for myself, likely saved my life.

After a few days in the hospital, I was transferred to a second hospital where a care team that specialized in PH performed a right heart catheterization. I discovered that I had low grade heart failure because of PH. I felt so much uncertainty after getting diagnosed. Estimates about a three- to five-year life expectancy if the disease was left untreated shook me to tears.

Would I have the energy to go back to work? Would I be able to afford the medications to keep the disease from progressing and manage a decent quality of life? Would my partner, family and friends still want to be around me?

A NEW CAUSE

With so much unknown, I gravitated toward the familiar: advocacy. I searched for stories of other people with PH. I discovered the Pulmonary Hypertension Association (PHA), and I began to connect with other people to learn how they were adapting to this terrible, life-threatening disease.

A year after my diagnosis, I watched on television as the Republican House majority voted to repeal the Affordable Care Act — the landmark health 20 PATHLIGHT ISSUE 3

reform law that made it illegal for insurance companies to discriminate and deny coverage to people with preexisting conditions, like PH. I know the frustration that comes with being denied insurance for previous health conditions, and the fear of a high stack of expensive medical bills.

In 2018, I attended my first PHA International PH Conference and Scientific Sessions in Orlando. I listened enthusiastically during the advocacy session to learn about PHA’s policy agenda and its federal and state-level resources for its patient and caregiver advocates.

SHARE YOUR STORY

My advocacy philosophy is rooted in storytelling: the people who bring their experiences to the table to change policy. Advocates are the backbone of any movement for change in law or policy or fight for a cure. I’ve seen advocates move legislators to speak out or support an issue.

My first PH advocacy action was when I published my diagnosis story on The Mighty, a blog for people facing health challenges, in May 2017. I also have written columns for Pulmonary Hypertension News about the importance of advocating during PH Awareness Month in November and year-round.

I’ve also written about the importance of reaching out to elected officials and urging Congress to lower the cost of prescription drugs, to make treatments more affordable for people with PH and other chronic illnesses.

I advocate because policy decisions made in Congress have real impacts for people like me who regularly use

30 YEARS OF PHA

the U.S. health care system. Federal funding allocations and changes in laws passed by Congress can dictate the affordability and accessibility of health care coverage and health care services. That includes the cost of prescription drugs for folks in the rare disease and chronic illness community.

Living in D.C., I find direct advocacy to be a bit of a challenge because we don’t have full representation in Congress. Still, I’ve used PHA’s advocacy tools to send letters to Congresswoman Eleanor

Holmes Norton (D-D.C.). I also participated in a PHA virtual advocacy seminar in June 2020.

INFLUENCING CHANGE

Elected leaders need to hear from PH patients, caregivers, family members and specialists. Effective advocacy can bring policy changes that improve quality life for all of us. You can visit their district offices, call or write them a letter. Get to know the staff of an elected official because they’re often your best ally and use the resources

made available through PHA. Most importantly, advocate in the manner that makes sense for you. I advocate mostly through writing and telling my own story.

Five years since my diagnosis, I am grateful to still have the energy and ability to work full-time and advocate on behalf of the entire PH community.

PHASSOCIATION.ORG 21

HEALTH MATTERS

RESEARCH ROOM

Advancing PH Treatment

A

July 29 webinar unveiled learnings from six studies conducted at the Pulmonary Hypertension Association (PHA) 2108 International PH Conference and Scientific Sessions.

Doctors shared updates about the studies in the PHA Live webinar “PHA Research Room Findings.” More than 200 patients and healthy subjects participated in Research Room 2018, sharing data and biological samples with 10 research teams. Five clinicians who participated in the 2018 Research Room shared results from their research studies during the webinar.

The webinar began with an update

by Paresh Giri, M.D., of Loma Linda University. He led a study that sought to evaluate the effects of study group participation on quality of life.

Significantly, 91% of the 165 people surveyed said that support group participation helped them.

Equally impressive, results showed that study group participation led to higher confidence in self-care, more medication compliance and better understanding of disease process. Not surprisingly, the study found that the farther patients and caregivers had to travel to their pulmonary hypertension (PH) physicians, the lower their quality of life.

Next steps: The research team plans to assess which elements of PH support groups are helpful and design a new curriculum that could led to beneficial outcomes.

22 PATHLIGHT ISSUE 3

Photo: Kathleen Sheffer.

INCREASING EXERCISE REHAB REFERRALS

Another study, led by cardiologist Thomas Cascino, M.D., M.Sc., University of Michigan, examined barriers to exercise rehab referrals.

The team surveyed 65 people, about half of whom had been referred to cardiac or pulmonary rehabilitation.

Those without a doctor’s referral for exercise rehab reported greater barriers related to cost, distance and other factors. The barriers greatly increased as the perceived need to exercise decreased.

The study can help doctors understand perceived barriers, leading to increased referrals and ideally better outcomes for the PH community. If patients and providers know about the benefits of rehab, use of exercise programs may increase, Cascino said.

PH RISK STRATIFICATION

A study led by Ray Benza, M.D., FACC, FAHA, FACP, The Ohio State University, asked patients to assess the importance and relevance of risk-assessment tools to guide care and treatment.

The study showed potential for a PH-specific risk-assessment tool that can help inform and educate patients, as well as involve them in critical decisions about their care. The data helped the researchers secure NIH funding to design a highly accurate risk stratification model, which features multiple variables to assess patients and shows how combinations of factors can affect patient outcomes.

Above: Research Room participants share blood samples at PHA 2018 International PH Conference and Scientific Sessions.

HEALTH MATTERS

PROTEINS UNDER THE MICROSCOPE

A research team led by Paul Yu, M.D., of Harvard Medical School, sought to identify new pulmonary arterial hypertension (PAH) biomarkers that correspond with disease severity and/or PAH causes. The 2018 study built on the previous PHA Research Room studies about PH biomarkers

by Dr. Yu and his colleagues. Ideally, the biomarkers would lead to quicker, more precise diagnosis and more effective treatment.

For this study, more than 200 PHA Conference participants donated blood to help researchers examine as many proteins as possible.

At this stage, the researchers are trying to identify proteins and genes

that could indicate disease severity or causes or could predict treatment response. The biomarkers could be important for identifying specific patient populations who might respond to specific treatments. The work also could support future trials.

NIH STUDIES

Michael Solomon, M.D., MBA, of the National Heart, Lung and Blood Institute at the National Institutes of Health, discussed two studies.

One clinical trial, SPIRIT-PAH, looked at the effect of spironolactone on six-minute walk distance and on the clinical progression of PAH. Spironolactone is a diuretic traditionally used to treat high blood pressure, heart failure and liver

disease. This study examined its antiinflammatory characteristics.

The study detected abnormal inflammatory responses in the blood of people with PAH. Lab evidence suggests the medication could reduce the inflammatory response.

Solomon also discussed a clinical trial call Natural-PAH, which is evaluating novel new biomarkers and imaging techniques that could give insight into the pathophysiology of PAH. If you missed the webinar, you can view it at PHAssociation.org/ portfolio-items/pha-researchroom-findings.

PHA 2022: PHacing the Future Together

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he theme for the Pulmonary Hypertension Association PHA 2022 International PH Conference and Scientific Sessions is “PHacing the Future Together.”

Tina Barley of Hamilton, Alabama, submitted the winning theme. Her idea was chosen from more than 100 ideas from more than 80 people. PHA 2022 is set for June 10-12, 2022, in Atlanta.

Tina’s daughter Caitlin and their experience at PHA 2008 in Houston, Texas, inspired her theme.

Caitlin had pulmonary hypertension (PH) for five years before she died in 2010. She was 15.

“I was so glad she was able to go to the Conference,” Tina says. “We felt so alone and so disconnected before we went. We met so many people there and it gave us so much hope.”

Soon after Caitlin’s passing, Tina connected with a fellow PH mom in a parent chat. The woman’s daughter Shaye Wallace was the same age as Caitlin

when she was diagnosed.

Tina says they just clicked, and Shaye was meant to come into their life for a reason.

Tina and her family keep Caitlin Barley in touch with Shaye, who turned 21 this year, and have visited her in Houston.

Tina plans to give her contest winnings, which include a $25 Amazon gift card, a one-year PHA membership and PHA swag, to Shaye.

“We’re in this together. You need that community of hope and support to get you going,” Tina says.

PHA stakeholders chose “PHacing the Future Together” as the winning contest entry because of its message of unity after the pandemic. The PHA 2022 theme will be featured on PHA’s website, in email campaigns, social media, the program book and onsite signage.

PHASSOCIATION.ORG 23

HEALTH MATTERS

Navigating Difficult Discussions Symposium Speaker Offers Tips to Improve Care Team-Patient Conversations

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n the final day of Rana Awdish’s pulmonary critical care fellowship, she became critically ill and ended up in intensive care. While on life support, she heard her care team discuss her in a way that made her rethink the way she interacts with patients.

Conversations with patients should be nurturing and allow health care professionals “to hold space for the deepest thoughts, worries and values of our patients and families,” says Dr. Awdish, M.D.¸ director of Henry Ford Health System’s pulmonary hypertension (PH) program.

Dr. Awdish will share her insight Oct. 2 on “Navigating Difficult Discussions in PH,” at the Pulmonary Hypertension Association (PHA)’s virtual Pulmonary Hypertension Professional Network (PHPN) Symposium. Symposium is a biennial event for allied health professionals who treat people with PH. Dr. Awdish began working with PH patients when she was in residency at Beth Israel Medical Center in New York. A young patient had come to the ICU with a large pericardial effusion, or excess fluid in the sac-like structure around the heart.

The build-up of fluid was a result of pulmonary arterial hypertension (PAH) that had long gone unrecognized.

After surgery to drain the fluid, the patient had complications and later died. That experience taught Dr. Awdish about the devastation of PH, the danger caused by lack of knowledge about the disease physiology, and the importance of specialty care.

The experience continues to motivate Dr. Awdish today, as does her own experience of being a critically ill patient.

In her Symposium session, Dr. Awdish will discuss patient-care team conversations and how care teams can

24 PATHLIGHT ISSUE 3

HEALTH MATTERS

encourage their patients to better participate in and navigate their medical care journeys.

She hopes attendees will gain a sense of the kinds of conversations possible in care settings. In patient visits, PH providers should help people with PH navigate their complex medical journeys and emotional reactions, as well recommend treatment options, she says.

Because of the power dynamic in medicine, patients often don’t know what’s possible in terms of their care, or what questions to ask, Dr. Awdish says.

This year’s PHPN Symposium, “PHiguring Out the Puzzle: Pieces to Innovative, Patient-Centered Care,” opens Sept. 30 with Advocacy Day and runs through Oct. 3.

Because of the power dynamic in medicine, patients often don’t know what’s possible in terms of their care, or what questions to ask.

This year, Symposium will be virtual for the first time because of the COVID-19 pandemic. Traditionally, PHtreating health care professionals gather in Washington, D.C., for professional development, networking, fundraising and advocacy.

Advocacy Day and Trivia Night, two popular features, also will continue this year in digital formats. Trivia Night, set for Oct. 1, will raise money for patient scholarships to PHA 2022 International PH Conference and Scientific Sessions. Trivia Night 2019 raised more than $10,000 for PHA’s Conference Scholarship Fund.

SYMPOSIUM HIGHLIGHTS Lightning-round poster presentations Attendees can earn continuing education credit for visiting abstract authors in the virtual exhibit hall and listen to lightning-round presentations of some of the most compelling research.

Pediatric programming Pediatric topics will be scheduled for every breakout session during the conference. Program information applies to pediatric and adult patients.

Accredited education sessions Attendees of the online event can earn up to 12.5 hours of continuing medical education credit/continuing education units for breakout and general sessions, as well as poster hall presentations.

An additional 12 hours can be earned afterward through on-demand recordings.

LEARN MORE: PHAssociation.org/symposium

PHASSOCIATION.ORG 25

HEALTH MATTERS

VOLUNTEER SPOTLIGHT

Find Your ‘Perfect-Fit’ Doctor

BY LORRAINE ROBBINS

FOR LORRAINE ROBBINS of Warrington, Pennsylvania, advocacy means speaking up for herself and her health care needs. She shares examples of how she advocated for herself between her 2012 idiopathic pulmonary hypertension (PAH) diagnosis and her 2020 lung transplant. Lorraine, 52, shares her story and tips to help others find their voices. Lorraine and her husband Jack have two daughters, Phoebe, 18, and Lorelei, 15, plus two dogs and three cats.

I ‘Helping others with PH helps me.

I fundraise and volunteer for PHA when I can.’

26 PATHLIGHT ISSUE 3

n July 2020, I went to the emergency room for fluid overload. I was very sick. I was admitted, placed on high-flow oxygen and spent the next 99 days in the ICU, waiting for new lungs, then recovering from surgery.

I am now free from IPAH. Since my diagnosis, the most important thing I did for myself was to find a perfect fit pulmonary hypertension specialist. For me, that is a doctor who listens, cares, asks questions, answers questions, and allows me to be part of the plan.

Over seven years, my doctor and I came to genuinely care for each other. While she was absolutely the expert, I’d like to think that we learned from each other. Make sure you find your perfect fit.

My PH doctor is no longer my doctor now that I no longer have PAH. Her last gift was to help me find my perfect fit transplant doctor, who is now on my journey with me.

LISTEN TO YOUR INSTINCTS

Throughout my PAH journey, I advocated for myself by following my gut. There was a point when I tried a newer

HEALTH MATTERS

medication that was supposed to be better for my PAH. But my health progressively went downhill during the 10-plus months I was taking it.

I finally called my doctor and asked to switch back to my tried and true Adcirca. Within three months, my numbers improved, and my echocardiogram showed that my heart was back to PAH normal.

I believe in doing whatever is necessary to have your needs met. Be the squeaky wheel.

During the eight years I needed supplemental oxygen, I had to push my supplier to give me what I needed as my breathing capacity worsened.

When I was diagnosed, I required four liters per minute, but my needs grew to six, then seven, then eight. I had to provide test results, documentation and explanations about why I needed so many tanks. I refused to take no for an answer: I am a mother of two with a life to live.

When I had unused tanks, I would stash them for our annual week at the beach. Sadly, asking for extra tanks for the trip was always a battle.

ACCEPT YOUR LIMITS

Accepting help is a big part of self-advocacy, and a hard one.

But it alleviates stress, allowing me to focus on what I can do. My family receives so much help and support, and our gratitude is never ending. My husband was diagnosed with late-stage colon cancer a year after my PAH diagnosis. He is now five years cancer free.

BE THE SQUEAKY WHEEL Educate yourself about PH. “I found resources,” Lorraine says.

“I found PHA.” Share your story again and again.

Plan ahead. Call venues to ask about hills, stairs, parking, storage for rolling carts with backup tanks.

Spread out large tasks. Don’t procrastinate, over-schedule yourself or multi-task.

STAY TRUE TO WHO YOU ARE

I also advocated for myself by refusing to let IPAH change the core of who I am. I count positivity as a medicine.

Those 99 days in the hospital for my transplant taught me so much: I am strong. Kindness matters.

Don’t be afraid to ask for what you need (I mostly begged for sleep).

Those caring for me were smart and equally

Above: Lorraine Robbins and husband Jack. Below: Lorraine receives a warm welcome home in 2020 after 99 days in the hospital.

strong. Advocating for myself meant recognizing the human in every person who helped me. In return, I was treated as a person, not just a patient.

I can’t say enough about my amazing transplant team. I am so grateful for the PH community, my care team, donor family and donor.

I continue to self-advocate by listening to my doctors, exercising, complying with medications and tests, and keeping positivity and kindness at the forefront of how I live this new life. I am extremely lucky to live in a part of the world where excellent care is nearby.

Do everything in your power to get what you need.

Advocate for you!

PHASSOCIATION.ORG 27

HEALTH MATTERS

Do You Have What It Takes To Help Others?

Volunteer for our Support Line

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hare your strength and empathy with other members of the pulmonary hypertension (PH) community. The Pulmonary Hypertension Association needs compassionate volunteers to take calls on its support line.

The support line is an invaluable service PHA has provided since its early days. In 1995, PHA established a toll-free help line as part of its founding principles to support people

with PH. The number, 800-748-7274, is still used today.

That first year, Suzie Richardson, stepmother of a teen with PH, answered the line on her home telephone. Soon, people with PH answered the calls. The volunteers provided information about the illness, related resources and encouragement through calls routed to their homes.

PHA founder Dorothy Olson

was among the early volunteers and frequently shared one of her memorable experiences: A young woman called from her father’s cellphone while they were in the doctor’s parking lot. Her doctor, who told her she had PH and six months to live, also gave her a PHA brochure with the help line number. “I told her I had been living with PH for 15 years,” Dorothy said. “She cried. This time, it was with relief.”

Today, PHA has support lines in English and Spanish. Each volunteer takes a weeklong shift; calls are directed to their personal phones.

Multiple volunteers work each shift to provide faster service to callers.

Volunteers fielded nearly 1,000 calls in 2020.

No experience is necessary, and the only skills you’ll need are compassion and a desire to help other people with PH, their families and caregivers.

VOLUNTEER FOR THE PHA SUPPORT LINE Visit PHAassociation.org/ get-involved/volunteer.

28 PATHLIGHT ISSUE 3

HEALTH MATTERS

Advances in Pulmonary Hypertension Recent Issues Focus on Systemic Disease, Group 5 PAH

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he August issue of Advances in Pulmonary Hypertension addresses pulmonary arterial hypertension (PAH) as a systemic disease. The previous issue examined Group 5 pulmonary hypertension (PH).

Advances in Pulmonary Hypertension is the Pulmonary Hypertension Association (PHA)’s quarterly peer-reviewed clinical journal. Advances is available for free online to the PH community.

Volume 20, Issue 3, guest edited by Ioana R. Preston, M.D.,

includes articles on: ▶ Pulmonary Hypertension in Collagen Vascular Disorders. ▶ Hematologic Disorders and Pulmonary Hypertension. ▶ Obesity and Pulmonary Hypertension: A Discussion With Deborah Jo Levine and Anna Hemnes. ▶ Obesity and Pulmonary Hypertension. ▶ PH Roundtable: PH and COVID-19 as a Systemic Infection.

Shlobin, M.D., says. “It is our hope that with the increased awareness of pulmonary hypertension in general, this often under-recognized and under-appreciated group will be on the forefront of research, as more guidance is needed to help clinicians caring for these complicated patients.”

The Group 5 issue includes articles on: ▶ Metabolic Disorders of Pulmonary Hypertension. ▶ Myriad Presentations of Sickle Cell Disease-Related Pulmonary Hypertension. ▶ PH Roundtable: Sarcoidosis and Pulmonary Hypertension. ▶ PH Grand Rounds: An Interesting Case of Sarcoidosis▶ Associated Pulmonary Hypertension.

Visit meridian.allenpress.com/aph to read Volumes 2 and 3, or sign up to learn when the next issue is available.

Volume 20, Issue 2 focuses on Group 5 PH. Group 5 is difficult to diagnose and challenging to manage because of the variability of underlying conditions and the ways PH presents, co-editor Anjali Vaidya, M.D., says.

“We hope that the readers will find this issue thought provoking, educational and practical,” co-editor Oksana PHASSOCIATION.ORG 29

HEALTH MATTERS

It’s Not Too Early to Prepare for Open Enrollment

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o matter what kind of health insurance you have, it’s important to be aware of open enrollment season. Open enrollment is the period when anyone can add, drop or change coverage without specific qualifying events or financial penalties.

Here are a few things to consider during open enrollment: f Double-check whether a plan will

continue to cover essential medical tests and medications in the coming year. Many

health insurance plans adjust their coverage from year to year. f Alert your pulmonary hypertension (PH) specialist and specialty pharmacy when changing health insurance coverage for any reason. That can expedite pre-approval

requirements and reduce your risk of temporarily losing coverage for your PH therapy. f When choosing coverage, be cautious of copay accumulators, a cost-shifting

practice by some health insurance plans.

Those plans don’t apply manufacturer copay cards or other financial assistance to your deductible or out-of-pocket maximum. This model is most common in commercial plans but has been showing up in some Medicare Advantage plans.

Some states laws restrict copay accumulators. If you believe your health insurance plan includes a copay accumulator, PHA can provide information about the law in your state. f Consider short-term, limited duration health insurance plans with caution. The

inexpensive plans are designed to provide coverage during an emergency for people experiencing temporary gaps in health insurance coverage. Short-term plans don’t have to cover hospitalization, prescription drugs or preventative screening.

Get help if you need it. Contact PHA for more plan-selection resources at Insurance@ PHAssociation.org or 301-565-3004 x758.

CONSIDERATIONS WHEN CHOOSING COVERAGE Your medical team and/or specialty pharmacy can be valuable in helping you understand and select coverage options. Here are items to consider as you compare health insurance products: f The premium, or monthly cost, to maintain your health insurance. Plans with more

expensive premiums might cover more services or cover them at higher rates, making them better deals in the long run. f Whether you must pay a deductible, or initial amount, before coverage begins. f Types of medical care you might need 30 PATHLIGHT ISSUE 3

in the coming year, such as routine tests or

hospitalizations, and how much of those costs your plan will cover. f Whether prescription drug coverage is included or you must buy it separately.

f Medication you expect to take in the coming year, whether the health plan’s formulary covers them and your out-of-pocket responsibility for each. f Whether the pharmacy network includes the specialty pharmacy that delivers your PH medications.

DATES TO KNOW MEDICAID, CHIP

In most states, Medicaid and CHIP enrollment are open year-round.

Program names vary by state.

MEDICARE (www.Medicare.gov)

Oct. 15 to Dec. 7, 2021, with limited additional enrollment options Jan. 1 to March 31, 2022.

f Switch between original Medicare and Medicare Advantage or between Medicare Advantage plans. f Add a Medicare Part D prescription drug plan, or switch between Part D plans. f Drop your Part D prescription drug coverage. f Coverage begins Jan. 1, 2022.

INSURANCE MARKETPLACE INDIVIDUAL COVERAGE (www.Healthcare.gov)

Nov. 1 to Dec. 15, 2021

f Enroll, disenroll or switch between plans. f Coverage begins Jan. 1, 2022.

HEALTH MATTERS

COVID-19

and the Future of Fundraising

T

he COVID-19 pandemic changed the way nonprofit organizations raise money. Like other nonprofits, the Pulmonary Hypertension Association (PHA) became more sensitive and flexible, and adapted how it raises money to support its mission and services.

Technology is paramount in overcoming the challenges of COVID-19, with video platforms successfully replacing face-to-face meetings and events.

Virtual events and video conferencing have become the new normal.

Last year was one of the most challenging years that many people ever faced. However, the pulmonary hypertension (PH) community came together, despite the physical separation from family, friends and care teams.

PHA supporters demonstrated resiliency and dedication through virtual events and individual donations. In fact, the PH community contributed more than $1.8 million to further our mission in 2020.

PHA realizes that some members feel economically vulnerable because of the pandemic, so it’s focusing on building relationships and maintaining trust within the community.

Understanding why someone supports PHA through a donation and communicating how that gift transforms lives is crucial as PHA continues to connect with the community. We strive to meet donors in ways they feel most comfortable. For some, it’s a large virtual event, for others, it’s the telephone or by mail or email. Staying connected throughout adversity is key.

In this heightened digital age, listening to donors is especially important.

What matters most to you? What can we at PHA do better? Let us know.

Contact us at giving@PHAssociation.org.

PHA RELIES ON DONATIONS to meet the needs of the PH community and achieve its mission to extend and improve the lives of those affected

by PH. Interested in getting involved in a virtual event or supporting PHA’s mission? Visit PHAssociation.org/pha-fundraising-events. Go to PHAssociation.org/donate to support PHA’s mission.

PHASSOCIATION.ORG 31

QUICKTAKES Awards Recognize PHA’s Outstanding Communications Work

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2020 Annual Report Available

T

he Pulmonary Hypertension Association (PHA) is pleased to announce the publication of its 2020 Annual Report. The report reflects on PHA’s achievements during a challenging year, flanked by the emergence of a the COVID-19 virus early on and emergency FDA vaccine approval as we entered 2021.

Despite the challenges, the report acknowledges PHA’s proudly patient-focused, patient-driven history — ­­ and its impact and momentum into the future.

The PHA Annual Report celebrates the association’s strides to fulfill its mission to extend and improve the lives of those affected by pulmonary hypertension (PH). The report shows the impact PHA makes through research, education, support and advocacy. And it demonstrates combined achievements in key strategic areas: empowering patients and caregivers, promoting quality patient care, catalyzing research for a cure, advocating for the PH community and ensuring financial resources to meet our mission.

he Pulmonary Hypertension Association won two awards for outstanding communications and marketing efforts from the Software & Information Industry Association (SIIA) AM&P Network. The EXCEL awards are the most prestigious recognition of excellence and leadership in association media, publishing, marketing and communications.

Our 2020 Pulmonary Hypertension Awareness Month: disCOVER PH campaign received a gold award for advocacy/awareness campaigns. The campaign, which launched our 30th anniversary celebrations, featured a digital Advent-style that each day revealed infographics, activities and facts about pulmonary hypertension (PH). The downloads, designed to share, included computer and phone backgrounds, social media covers, coloring pages and more.

PHA also received a bronze award for our 2020 COVID-19 pandemic response, which included COVID-19 information pages on PHAssociation.org, PHA Connects webinars, print and digital mailings, and articles in Pathlight magazine and PHA News.

The awards highlight the importance of PHA’s continuous work to educate patients, health care professionals and the public about PH. The PHA team works year-round to raise awareness of the disease, its symptoms, treatment and associated conditions — not just during Awareness Month in November or World PH Day in May. Reveal Today’s PHact in our PH Awareness Month Calendar

Read PHA’s 2020 Annual Report at PHAssociation.org/accountability.

32 PATHLIGHT ISSUE 3

Nov. is PH Awareness Month

HOW TO REACH US 301-565-3004 | FAX 301-565-3994 PHA@PHAssociation.org WEB PHAssociation.org TEL

EMAIL

INSURANCE FIND

Specialty Pharmacy Form

Connecticut Bans Co-Pay Accumulators

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tate-regulated health insurance plans in Connecticut must count copay cards and other financial assistance toward deductibles and out-of-pocket maximums, thanks to pulmonary hypertension (PH) and rare disease advocates.

In June, Gov. Ned Lamont (D) signed a law that prohibits copay accumulators. The law, passed with bipartisan support in the Connecticut General Assembly, significantly improves health care access for Connecticut residents with PH and other complex, costly health conditions.

The victory is the result of lobbying by the Pulmonary Hypertension Association (PHA), and the PH and rare disease communities. PHA Board of Trustees Chair Colleen Brunetti (pictured above) was among those who educated lawmakers about the issue for years.

“The stories of people with rare diseases who live the reality of our health care system’s shortcomings hold a lot of power,” Colleen says. “Building relationships with your representatives and sharing your story can affect real change. It takes patience and persistence, but it is worth it.”

Your relationship with your specialty pharmacy matters.

You depend on prompt, accurate delivery of your pulmonary hypertension medications. The quality of service you get from the specialty pharmacy impacts the quality of your life.

The Pulmonary Hypertension Association (PHA) can help you build a relationship with your pharmacy. Use PHA’s Specialty Pharmacy Feedback Form to communicate praise or needed service improvement.

Visit PHAssociation.org/specialty-pharmacyfeedback, or call 301-565-3004 x758.

THANKS TO

Janssen Pharmaceuticals FOR SUPPORT OF PHA’S TREATMENT ACCESS PROGRAM.

PHASSOCIATION.ORG 33

30 YEARS OF PHA

CALENDAR OF EVENTS E

Step Up to Bat to Fight PH

SEPTEMBER 30-OCTOBER 3 PH Professional Network Symposium Online

SEPTEMBER 30 PHPN Advocacy Day Online

NOVEMBER Pulmonary Hypertension Awareness Month Online

NOVEMBER 1 Advocacy Day of Action Online

NOVEMBER 10 CTEPH Awareness Day Online

NOVEMBER 30 Giving Tuesday Online

JUNE 10-12, 2022 PHA 2022 International PH Conference and Scientific Sessions

leven-year-old Tyler Garigen doesn’t let pulmonary hypertension stop him from doing his favorite things: playing the guitar and playing baseball.

Diagnosed at 4, Tyler is the face of the Pulmonary Hypertension Association (PHA)’s fall fundraising campaign. Tyler and his parents shared his story to ensure PHA can continue its mission that began 30 years ago: to extend and improve the lives of people with PH. The Garigen family attends PHA support group meetings to share their concerns and exchange experiences with other families affected by PH. The family also attends PHA’s International PH Conference and Scientific Sessions, where Tyler met other kids with PH for the first time.

“I’ve learned so much about PH because of PHA,” Tyler says. “I want other people to be that lucky, too, so we can fight this disease and get rid of PH for good.”

JOIN THE GARIGEN FAMILY in making a donation to PHA. Visit PHAssociation.org/donate-now.

Atlanta

VIRTUAL FUNDRAISERS Visit PHAssociation.org/ pha-fundraising-events to find a virtual fundraising event in your area.

CONTACT US 240-485-0762 events@PHAssociation.org

34 PHASSOCIATION.ORG

PHA thanks its national fundraising-event sponsors for their generous support DIAMOND

PLATINUM

SILVER

30 YEARS OF PHA

Passages

PHA’S LEGACY OF HOPE

Since the Pulmonary Hypertension Association (PHA) began publishing Pathlight, “Passages” has provided a place to memorialize people with pulmonary hypertension who pass away. PHA extends its sympathy to the families and friends of these individuals and rededicates itself to its mission in their memory.

Noreen Anosov Gloria J. Austin Segis Daniel Avila Olga Balda Gonzalez Kim Bankhead Maryanne Barranco-Byrne Robert J. Benn Patricia A. Booth Erin M. Brinker Nancy J. Brunker Joseph F. Byrne Elizabeth M. Caywood Mike Clark Amanda K. Cohen Lindsay R. Collins Asra Corcoran Ellen Culmon Glenda C. Davis Kathy DeCrane Florence Deneweth Kristi Duffy Frances M. Etzkorn Barbara Field Priscilla C. Franz Angela N. Gaines Robert Génier Glady Gerdes-Mesman Catherine Gire Terry A. Glover

Joanna B. Grey John Grzelewski Ruth M. Hartmann Roberta Hughen Billie Jo Jensen Myrtice S. Johnson Peggy Kelly Gary S. Kohn Judith Y. Kramer-Hadley Michael G. Lankin Ruth C. Latimer Ellie Leitch Alfreda Lewis Howard A. Lindsay Brent W. Martin Saundra L. McAviney Susan McElroy Christine Morgan Robert J. Morrow Caroline L. Nartker Paula A. Nash Ted R. Newell Steven Newsom Jennie L. Norred Twighla Painter Alexander A. Panzano Michael Reid Dawn L. Roser Virginia Ryan-Halloran

Tracey Saunooke Connie Schubert Joyce Serafini David B. Sisk Carolyn L. Stoorza Connie Strahler Hazel L. Taatjes Mercedes Thompson Marilyn M. Tipple Susan Tusing Carol S. Vickroy Gary Warren Elaine White Cindy Wileman Debra E. Williams Mary J. Woods

The accuracy of this list is important to us. Please contact the PHA office at 301-565-3004 x746 or Passages@PHAssociation.org to share the name of your recently deceased loved one or report an error or omission.

Your donations in memory of others, in honor of others and in support of our mission mean so much to the entire PH community, and we thank you.

To honor those who have included PHA in their estate plans or whose legacies have been realized, PHA created the Legacy of Hope Society. PHA is pleased to recognize the following members: Laura* and Rino Aldrighetti Alice A. Arnott* Sandra A. Awood* Dauna L. Bauer* Sylvia M. Becherer* Joan F. BennettSchenecker* Kris L. Best Gloria G. Blodgett* Dorothy E. Bradley* Mary M. Brady* R. J. Braun Roberta F. Browning* and Lee A. Broadbent Rita and Bruce Brundage Colleen Brunetti Colleen and Shawn Connor Jane P.* and Harold P. Cooper James F. Corbett* Nicole M. Creech Laura H. D’Anna Charles W. DeVier, III* Linda M. Feibel* Barbara T. Gamer Stacey Gausling* Franklin D. Gillespie* Tammy A.* and Dean S. Hazen Mary Jan Hicks Carl Hicks, Jr. Phyllis M. Hill* Jackie Holt Richard L. Horrocks Constance G. Ives* Terri L. Jakuboski* Stanley T. Jusinski Laura J. Kelly* James Kenney Jessie Kohler-Wenninger Terri L. Kopp* Debbie L. and Mitchell Koppelman Dee* and Walter Kruger* Gloria J. Lang*

Marie and Ronald J. Levendoski Mary Jo* and Thomas Linnen* Sally Maddox* Bonnie and Michael D. McGoon Joseph W. Mihuc* Linda Miles* Karen S. Moody Larry D. Moody Pamela R. Morris Marjorie D. Mott* Joyce L. Mowrer* Dorothy M.* and Harry J. Olson* Theresa “Terry” E. (Cavanaugh) O’Reilly* Rita and Guy Orth Patricia R.* and Gerald D. Paton* Cynthia and John R. Pickles Jean D. Pitcher* Carol L. Powell* Frances A. Price Carol J. Posner* and Marc Priore Diane Ramirez James Ryan* Louise C. and Gene P.* Salvucci Judith and Edwin L. Simpson Kelley Skumautz Marcia and Jack Stibbs Helena M. Strauch* Douglas R. Taylor Frank A. Tobac* Martha and Carlos Torres Deborah J. and Roger K. Towle Carol B. Ungar Daniel R. Walsh* Andrea and Stephen L. White * deceased members

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